Kylie’s Carer Story

Our daughter was just 12 when diagnosed with anorexia.  It was the July school holidays 2019 when I noticed a few odd behaviours around food, refusal of a few of her favourite foods and a couple of my friends who commented on her weight loss which I seemed to have overlooked with winter clothing! 

Quite quickly these changes became more notable.  She became obsessed in cookbooks, cooking shows and preparing food.  But each day she was eating less and less which led to starvation and a hospital admission within just a few weeks.

Our world stopped…

We had no idea what to say or do other than gently coaxing her to eat some more.  We knew something was seriously wrong – especially when I would sit with her at bed time holding her hand.

 She was physically cold to touch. It was a distressing time and in hindsight we should have taken her to the Emergency Dept but we just didn’t know what to do.

Our GP ran blood tests and told us nothing was showing up out of the ordinary and diagnosed an ear infection.  We had never really weighed our kids so had no real point of reference with weight loss and she was still sitting just within the minimum range.   I contacted our school nurse for advice (who later became an amazing support) and she kindly directed me to the Butterfly Foundation which then led us on the right path to see a peadiatrician who specialised in eating disorders. There was a wait list but I rang several times desperate for help and thanks to a cancellation she was able to fit us in within just over a week.  

From this appointment our daughter was admitted straight to hospital.  She was medically unstable with a very low heart rate and we were shocked to be told that without medical intervention her heart could stop.  This all happened within just a few weeks from when we first noticed those odd behaviours around food.

This was the first of four hospital admissions that followed over that very hard year ahead. 

A brutal, dark new world

That first admission was a shock – it was a brutal, dark new world we found ourselves in – admitted to an eating disorder ward with three older teenage girls, and a soon to be had diagnosis of anorexia.  I don’t even think our daughter knew the word anorexia at that age.

The rules on the ward were tough but we knew it had to be done to save her life.  She was hooked up to a heart machine and tube fed for the first 3 days, bed and wheelchair bound to conserve energy.  It was heartbreaking for us all to get our heads around and accept this was happening to our little girl – how did we find ourselves here?  I certainly had no idea it could present in kids this young.  It was even harder for our then 10 year old younger daughter to understand what was happening and why we wouldn’t be bringing her sister home for at least a couple of weeks.  Sadly both girls grew up way too quickly from that point on. 

We were exposed to things on the ward and living with this illness that were very confronting for us all.  The hospital admissions that followed were hard but bought relief and respite – our daughter needed more care than we could provide at home and these were the only times we could really find access to the extra help we needed.

The most important job we would ever have

What followed was nearly 2 years where the days blurred into each other through difficult, consuming and life changing FBT treatment to keep our daughter safe and well.  Each day the same – 3 meals, 3 snacks, maximum calorie intake and the difficult task of getting our daughter to eat what was given to her.   

Some days were better than others in a strange type of way, but most days were difficult – we lived in a very abnormal world for what felt like a very long time!   There were often months at a time that were like groundhog day – days that presented the exact same challenges and same ED behaviours.  As carers and family it took time, a whole lot of persistence, patience, pain and distress!  We assumed hospital was the hardest bit and the only way was up.  What we didn’t know then was that it was just the beginning. 

FBT treatment was tough but saved her life. 

I wish I’d known…

On reflection I wish we were supported so much more on the delivery of this treatment with a more individual approach.  I feel like FBT affected our family in ways that will take a long time to heal, but deep down I know this was anorexia that did this, not the treatment.  We became damaged and disheartened from the intensity of delivering a treatment under really extreme circumstances with no ‘option B’ and very little professional support available.  

Anorexia and my child - a carer story

This often left me feeling like our best just wasn’t enough and triggered my reactions and emotions!  We never really got out of phase 1 FBT nor was our daughter able to hold physical restoration despite our committed attempts and nearly two years of supervised meals six times a day.

Being self employed I was fortunate that I could visit school for recess and lunch in the carpark – shared some days with my parents and a close friend.   There were times in the early months when it felt like things were going well but it mostly felt like a false sense of security as we continually came in and out of extremely difficult and distressing phases of compulsive ED behaviours.  

It is hard to put a lot of those times into words – many are too unfathomable to speak of to those that haven’t lived it.  The pain and heartbreak living through this was beyond words.  But I know those reading this in our support groups get it.   We tried to do ‘normal’ as a family in the outside world but behind closed doors our normal was so far from normal it often felt ridiculous, or like some sort of cruel joke!  We were trying to live as best as we could in two very opposite and extreme worlds!  That in itself was exhausting.  When others were celebrating their child’s success at school or sport, all we could think about was whether we could get our daughter to eat enough to keep her out of hospital that week.  A few extra mouthfuls of food were the wins we were quietly celebrating behind closed doors.  And then there were the multiple appointments each week and loads of food shopping and prep – life completely revolved around meal times and her eating disorder six times a day, week after week, month after month….. it was relentless !

Healing from the trauma

We are now coming up to 3 years on and our daughter is now 15 and thankfully in a more stable place.   She now eats her 3 meals independently and is no longer controlled by extreme ED thoughts and behaviours.  However I know she must still have ED thoughts (despite her telling me otherwise) as she now refuses most snacks, refuses to be weighed and resists professional support.  Or maybe it’s just her determined personality trait that can’t be told what to do? 

She still has occasional outbursts when ED is challenged, just nothing like it used to be and life has returned to somewhat normal.   Her brain and body are healing, however I know she is not in text book recovery. I have had to accept this and learn to let go a little for the sake of my own mental health and that of our family.  As hard as it is I have learnt that I cannot control her choices or outcomes, but I can control mine which is where I have had to shift my focus to try and be the best parent I can to support her for the long haul.  Something I am still trying to master.  We’ve had to rely a lot on natural consequences playing a significant part in her recovery.

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